Mainstreamed genetic testing: intentions, decision-making and outcomes
Research type
Research Study
Full title
Mainstreamed genetic testing in ovarian cancer: intentions, decision-making and outcomes.
IRAS ID
199605
Contact name
Anne Lanceley
Contact email
Sponsor organisation
University College London
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Ovarian cancer is the fifth most common cancer amongst women in the UK, and accounts for more deaths than all other gynaecological cancers combined. Mutations in the cancer susceptibility genes BRCA1 and BRCA2 are known to confer risks of breast and ovarian cancer up to 80% and 40% respectively. To date BRCA genetic testing has been the domain of clinical genetics services. Moving genetics into ‘mainstream’ medicine is a key strategy in response to the increasing demand for genetic testing in conditions such as ovarian cancer, where there is a substantial element of inherited disease. Ovarian cancer patients will benefit from knowledge of their BRCA genetic status by providing information on prognosis, response to treatment and guiding treatment options.
Despite the benefits and increasing availability of mainstreamed genetic testing (MGT), the impact on patients of moving testing from the specialised service of clinical genetics to the acute oncology setting remains unknown. Although genetics in medicine is rapidly progressing towards a mainstreamed approach, it is important to identify if this is both feasible and acceptable to patients. In particular, little is known about ovarian cancer patients’ interest or attitudes towards BRCA genetic testing, their intentions to accept an offer of testing, the decision making process, or outcomes from MGT.
This PhD aims to explore understanding, uptake and the impact of MGT amongst ovarian cancer patients. An initial cross-sectional survey will explore ovarian cancer patients’ interest, attitudes, knowledge and intentions related to MGT. A second cross-sectional survey will examine the process of decision-making amongst ovarian cancer patients offered MGT. A third study will use repeated measures to assess the psychosocial outcomes of MGT. Qualitative interviews will be used to further explore in-depth decision-making and outcomes of MGT.
REC name
London - Hampstead Research Ethics Committee
REC reference
16/LO/1226
Date of REC Opinion
8 Aug 2016
REC opinion
Further Information Favourable Opinion